It's been two years since I used a Gofundme for my chronic illness.
When I was diagnosed with my second form of arthritis, osteoarthritis in my spine I was also told I had a lump on my thyroid. Words like benign, cancerous, biopsy, tumor and once again no cure were being thrown at me. I was told my spine was degenerating, I could feel and hear this happening.
I felt like I was stuck in a fog. I couldn't concentrate on anything as my thoughts spiraled out of control. I was suddenly being sent in for xrays, blood work, ultrasounds, a biopsy, bone scan, MRI. I was barely able to accept my initial diagnosis of Rheumatoid Arthritis when I was hit with this news. I was scared and confused. I felt so alone.
I wanted answers. I wanted relief. I wanted to know if I was going to be okay and if I was going to be able to continue to be a full time mother. I was too sick to care for my son on my own for several weeks. I was terrified, more than I had ever been in my life.
When you live with an autoimmune disease you tend to be a little more hyper aware over pretty much everything, especially lumps and infections. I live with a compromised immune system after all. It's harder for us to fight things off and potentially can be very deadly. Chronic illness can often lead to comorbities and fatalities.
I was told I could try physiotherapy and a chiropractor, but I knew there was no cure for the joints in my spine slowly deteriorating away. The pain I was in was excruciating, I didn't know if it would ever go away. I had just started my first biologic Humira to treat RA after being scared for 6 months to try another medication after my experiences methotrexate and plaquenil.
The more I looked into my diagnosis, the less hope I felt.
I needed help and I needed help fast.
With the help of a Gofundme I was able to
Pay for treatments right away to relieve pain, focus on my health, focus on my diet. I used the money to consult with a naturopath, chiropractor, physiotherapist, massage therapist over a 6 month period. Found what works for me when I normally couldn't afford it and what doesn't work.
I forced myself into see a psychologist and clinical social worker who helped me with the process of becoming disabled, pain, anxiety and depression medication.
I purchased medications not covered by insurance or their portions that aren't, medicinal marijuana, vitamins, supplements, a gym pass and equipment.
It helped me lose 50 lbs over my journey, I bought new clothing since nothing fit me anymore. I focused on building up my confidence and self love during the darkest of times.
I live near one of the most expensive cities in North America, it comes with a bit of a price tag. Bills, rent, food, my kid. I strive to keep where I live because of the convenience my location offers me as a chronically ill single mother. I need to be near my doctors, son's school and where I can take care of myself. I still struggle.
What also happened
Obviously when you ask for money or help some people have to have their say in the matter, not always is it the kindest words and people are often quick to judge. People who may have had previous drama with you, even years ago, felt their need to say I didn't deserve help because some drama or petty judgement on their behalf.
I look back at that time, how sick I was and what was going on in my life. I was heavily involved in a crowd that isn't typically very supportive of women, children nor the disabled. I felt the repercussions of that when I needed help and couldn't do what they wanted anymore.
Some people lack empathy or compassion and feed off drama or the misfortunes of others.
Not a lot of people understood the severity of autoimmune arthritis. I didn't need help or money, that's not a severe disease. I often heard "it's just arthritis". I didn't look sick, how could I do one thing but then say I couldn't the next? Sometimes it takes only living with the disease to fully understand the severity. That is very common with chronic invisible illnesses.
Many people ignored me or decided to no longer speak to me. You really discover your true friends at times like these... And true support from family. This was also when I stopped speaking to my mother and her entire family. Years of childhood emotional and physical neglect later started to seep out into my memories. I was angry, scared, stressed and sick.
I was riding the free wave and just trying to pay for tattoos. I actually never spent one penny on tattoos, if I have they have been gifts from my dad or maybe a guy I was seeing.
My tattoos now add a visual intrigue and bring attention towards my arthritis advocacy. That makes me proud of them, even though many are unfinished or old. They are a part of me, just like my arthritis. Just because I am sick doesn't mean I am going to stop being me. Tattoos and arthritis are in my journey, it's just 2018 so they're more common. If I was born in the early 1900s I could be part of a carnival. The tattoo arthritic lady. I could have been a big hit. Goals?
What it did to me
This experience, both positive and negative sparked my interest in patient advocacy.
However a situation like that would normally break someone. That time shaped me in to who I am today, a very strong woman. I learned independence I didn't believe I had in me. It taught me a lot, especially about people, myself, and what I need in life. It taught me about kindness, empathy, compassion and gratitude at levels I could never imagine. I struggle with it being for all just me, so I try to find my ways of giving back.
The comments I heard made me realize my disease needs some severe advocacy work done. I became the patient advocate I have become today.